Really Irritated ....

[cardiactec]

I have been out on disability now for four months and will not be going back to work. I talk occasionally with one of the girls I used to work with and she just told me tonight that people are/were talking about me behind my back saying that they didnt believe I was even sick or was tired of hearing me complain about how I never felt well.

I am deeply hurt as one of the people that were making such comments I thought was a friend of mine .....

Sometimes I wish, if I HAVE to have a medical problem, that it could be something more COMMON than all these weird conditions I have. People are more compassionate and understanding to the medical problems they are familiar with (well, at least most of them lol) ......

It just hurts to hear this ...... I tried my hardest not to "complain" while at work but it is hard when you feel so poorly all the time. the hospital I worked before this last place, before i was essentially booted out because I couldn't do 5% of the work (but COULD do 95%), one of my co-workers said "you know, the next place you work at you really shouldn't complain so much or talk about your medical problems, it really gets annoying.... I have tennis elbow and I don't complain about it every day" ............tennis elbow ??? I'D DIE TO JUST HAVE TENNIS ELBOW!! I'm sorry but when you're puking almost every day because your stomach doesn't work, your pulse is 200 and your weak and shaky because of it, and your blood pressure is bottoming out and you feel like passing out ALL the time, its kind of hard to put a smile on your face and fake feeling like a million bucks! ugh.

People are so hurtful. Part of the reason why I went out on disability was due to the comment re: tennis elbow and I felt myself not being able to keep quiet about how poorly I was feeling with this newer job..... so I guess they all got what they wanted. no more complaining....

I'm really down tonight over all this ....

[lieze]

I've had this same exact problem at work.

Not only do they not get it. Can't blame them I had never heard of POTS or dysautonomia either but they said I was "crazy". Well I'm sorry they might feel crazy too if they felt the way I did at work.

There is one person there who I think understands. I found out her daughter has it too.

She knew right away what I was talking about.

Everyone else just looks at me weird.

I have decided not to let it bother me but I was hurt too very badly.

I have been a good employee there for 18 years and I felt like they were just making me out to be a loser.

I am not a loser. It sounds as if your symptoms you were experiencing at work may have been worse than mine most of the time. I had some bad ones too and had several ER trips straight from work. I just got to the point where I could not stand feeling like that at work any more and cut my hours way back. I still cringe before a work day not knowing how I'll hold up. It's just very unpredictable.

Believe me your coworkers just have no idea at how horrible this feels. They have no clue whatsoever. I think before big problems like this as people we really do take our health for granted. I in particular abused my body I can look back now and see that with the patterns I had. It is no wonder I got sick at all.

What they are saying is basically coming from ignorance. I'm sorry to say it but I think it's the truth-they just don't understand that's all there is to it.

[MightyMouse]

Oh hon, how I've been there. In my case, it was actually MY BOSS who was saying all those horrible things behind my back...and worse, said I was making it all up. That's right, I made up having a broken neck. Nice. Thank heavens for the friends I had there who stood up for me. I did hurt though, and I swear if I ever see that woman again, I'll tell her what for.

[MomtoGiuliana]

So sorry. Unfortunately I experienced this too when I was out of work due to POTS. And I have a friend with autonomic dysfuntion who just left a very demanding job who experienced this. It is hard for people to grasp how sick we are when we look like we are well. It's sad and hurtful.

[Guest tearose]

I really understand and feel for you.

We already have sensitive ANS systems and then to have to deal with insensitive mean people adds to our challenges.

Try not to let the comments get to you. I know it is hard but think of those words just running off your skin rather then allowing them to enter your ears and heart.

hugs,

tearose

[ladyt]

Hi.

Its not easy dealing whit hurt full comments either rigth in front or backtalk. But i prefer the ones directly to my face, that are straigth forward. The backtalking is harder, one wasnt there so harder to defend one to. But as long as i dont know about it I gess i dont mind that much. And then there is the passive agressive or indirect comments. they are really hard to deal whit. I think does sort of remarks are the most difficult somethimes. Sepsialy if u feel like the butt of every ones els joke, and u are not in on it.

Dont get me wrong, humore is importan tool , its a bigg part of my life. I can def joke about my illnes to most people. And if they joke back i dont mind most of the time (ofcourse depend on how they do it). But when people I know dont exept my illnes and think me full of nervs makes insensitive jokes well.

The advice about lett the hurtfull stuff ust not gett to u is, well the best thing to do. But its not always one manage that. We humans are beings of feelings. I desided that i would try to laugh of the stupidity of people and feel sad for them for being so ingorant. And use my experiense to be more awer of others feelings. If I was an angle I migth akomplish what I sett my gaols to bee

But dont lett the hurt eat u up. Gett it out. Writing here is a god choice, suronded by people that better understand what u are goin trhou. If u have friens u can talk about this do so.

If it gett me i migth listen to a sad song and cry. or an angry one and scream. The people I dont really like that much i never cry over their comments I gett angry. So I play angry music

I never talk much about my illnes thou. People that are healthy ore semi so ust dont have the knowlege to gett what this is about. I gess some of the worse are some that have minor issus and think if they can do what ever so can every one els..

I had tennis and golf elbow (still sort of have). And yes its painfull and can put limits to what one can do. But its not the same as pots. (I had it in both arms, shoulders too).

have a nice day every one, lett the hurt run of

[ramakentesh]

I can totally relate. If they dont have it they cant understand. But trust me if most of them had it for a day they would think you were a saint!

I usually lie - and tell people I have something else they know better or that is easier to explain:

1. I suffer chronic migraines (which is true)

2. I suffer status migraine (a migraine that nevert went away)

3. I suffer from hypovolumia (my blood levels are 20% below normal - most people can understand why that maakes you feel sick).

whereas if you say dysautonomia is sounds benign.

[brownsea]

i know at first its hard and i think it has to do with having a rare illness. ive had a few comments along the way, in the beginning i took them to heart. now i just smile, some people really dont understand, others however have issues of their own to deal with and are putting all their problems on to you to deflect from themsevles.

its like liars never believe people because they know they lie themselves. so look at little more closer at these people, i did, and they arent that truthful so expect you not to be.

when this does happen try if you can to do something nice for yourself or others, i have and it works sometimes. we all know how awful this illness is on our bodies dont let some silly person make you feel worse.

xxxxx

[miranda]

sorry this has happened to you , I have always been a sensitive person and cared too much what people think all the time , but over the years I realised most people do not care how I feel, infact only 2 weeks ago a friend of mine complained how she always had to call for me at my door and how I never call for her , yet Ive told her I have orthostatic hypotention and NMH and find being up right difficult.

Honestly , we need to be thick skinned with these problems - I have got to the point where I dont care what people think anymore , two fingers in the air attitude is the only way for me.

[ramakentesh]

There are times where people do things to me when im ill that I just have to say 'wait til im feeling better' to. Im naturally a fairly assertive person but when my POTs flares I cant deal with confrontation or stress. So i just file it away for when im feeling better.

None of my friends really get it. The only one that does is the singer in my band and he has substance use issues.

Life is to short to care what they think. Like I say, trust me if they had it for a day they would have complete respect for you.

[Christy_D]

It's not just adults either. My son has had to deal with his friends(he is 15) telling him he just doesn't want to go to school or that he is faking. One friend told him his teachers didn't believe him, he felt so bad that everyone thought he was faking. I spoke with his teachers, and no one thought that and neither did his other friends. This one kid was trying to make him feel like everyone was against him. It made me so mad that not only was he missing his childhood, a friend was isolating him even further from the rest of the world.

He had to learn who his true friends were and limited contact with the hurtful friend.

[hensor]

Sorry work is being so insensitive. It really is hard to get people to understand without them switching off and thinking you are just complaining.

My direct colleagues have been amazing - but I think it is partly cos over half the people I work with have close relatives with big medical issues, so they are used to the reality of complex medical conditions. The facilities team however kicked up a massive issue about my department being 'demanding' in asking for a cool office, and even in an official investigation said how I was being 'unreasonable' - it really hurt when all I was asking was to be safe and not collapse - I'd compromised on giving up kitchen access, staff canteen access, ability to make myself tea, ability to visit colleagues in closely linked departments - and then said I was unreasonable! - some people are incapable of seeing what is infront of them.

I've also learnt ways of explaining that highlight that it is a life-affecting condition not just mildly annoying. One of my main ones is that when explaining to someone new I will say "I've got PoTS - it means my heart rate screws up really easily and if I don't get it back under control quick enough I go like I've had a stroke - slurred speech, loss of coordination, incoherence etc." At which point they look horrified and start to panic, then I say "Oh don't worry, it isn't life threatening, I'm not having a stroke - it's just dashed inconvenient." Which then makes them think I am some kind of hero to cope with it all and still smile, and I have a better chance of them understanding that if I say I'm not feeling too good then I REALLY mean it and don't mean I'm a little tired!

I find it much harder with people I have known from before my symptoms were disabling. Cos my PoTS is EDS related I have 'always had it' to some extent so a number of my long standing friends simply don't get it, and are offended when I don't come to things etc. Or just don't get that I when I say I need a quiet day, I mean a day of complete sofaness that is NOT the same as being lazy and wasting time.

I also think that because we often have to push so hard just for a semblance of normality, any comment that suggests we aren't trying is sooooo difficult to take.

Rest assured though that there are plenty of people here who do understand. Who do believe.

Hannah

[Simmy]

I couldn't have said it better myself, Casper, you gotta be able to laugh. Humor always makes me feel better. But I know how hurtful it can be when for years, someone you thought was your friend and understood what you were going through, was in fact laughing at you behind your back and lied straight to your face when they said they understood.

I can't get over how cruel some people can be, but I can appreciate why many are unable or unwilling to sympathise with us, as it's simply something they've never heard of and have a hard time buying it.

It's obvious in society that the little old lady with a cane always gets the seat on the bus, the wheelchair user has the door held open for them, the hairless cancer patient gets looks of caring sympathy and anyone else with a recognizable disability is looked upon as someone who deserves our understanding and compassion - for that I am proud to be human. With further awareness we will eventually earn the respect we deserve.

For now, since our quality of life is often compared to that of someone with congestive heart failure, perhaps that's what we should tell people we have, which is really not that far from reality (symptom-wise).

And I'd gladly trade my left elbow for a POTS-free life.

[HopefulLady]

Cardiactec

I am so sorry for what you have had to go through .. People can be so cruel and thoughtless until they are put in a similar situation. I know how you feel I really do. I went through this same stuff even with family. Being sick really makes you appreciate everything in general and teaches you to be more patient and compassionate with others. Your not alone even when other's don't understand you .. You have many of us here who do! I have learned to just suck all the crap up and not worry to much about people who are not really concerned about me . Just getting upset or stressed only makes our illness worse. Everything will be ok just try not to let it get to you. Smile it will all be ok

[cardiactec]

Thank you all for your caring and uplifting words ... what makes it even worse in my situation is that i worked in cardiology and because i was seeing a cardiologist (he didn't work at the facility i was working at) for POTS, that relationship, to some degree i believe has been severed ever since i started working at the last place i was at for a variety of reasons.

It's times like these that I wish I was an accountant or something! .... the medical community is a very tight knit community (too tight).

All of your words were very encouraging. I am glad I am not alone with this experience and i'm glad all of us can relate to one another and understand each other. It is beyond helpful. Thank you all.

[Maxine]

I'm sorry cardiactec, I know how upsetting and hurtful it is to have people talk behind you back at work like this------or people from anywhere for that matter. It's hard enough dealing with such rare medical conditions, and adding the stress of such ignorant people is not something we need to add to our list of troubles----we have enough....

What's really shocking and hurtful is when you think the people who should understand the most fail you..... Please try to not think about these obtuse people and move on to those people who offer support, love, and compassion.

Sending you a BIG HUG.

Maxine :0)

[issie]

I've learned that even some times the people who act like they care, don't. You truelly find out who your friends are. Since I've had my broken foot, it has surprised me who is there for you and who isn't.

There has been so many times that I've said, "I just wish I had purple polka dots". People would then know something was wrong. A friend and I were discussing this. We both learned ---be careful what you wish for. I got vitiligo. White spots all over me, I'm losing my skin pigment color and she got psoriosis. Neither one of us really wanted "spots". When your body starts to give up, sometimes it just does.

We all are facing the fact that not only do our friends and family, not understand. But, there are some pretty unkind and unknowing doctors out there too. Maybe some day, this will be more understood and taken seriously--like other illnesses that have been in the same catagory in the past. We just have to be patient and try to remember most people are just ignorant of our illness. Try to overlook it and keep pressing forward.

[Tammy]

Yes, this happened in a similar way to me also. I was so surprised that a few of the people I had worked with completely turned their backs on me when I started getting to sick to work. These were the same people that when I was healthy I just LOVED working with. Amazing how an illness can help a person discover who their true friends are.