I Guess They Don't Get It!!

[erikainorlando]

I was helping (doing a little work on my masters)..I only help a few hours in the morning when I can. So today I had something to do in the am and so I didn't arrive until 10:30. At noon...I am really ready to leave andlay down!! SO I start heading for the door...and the woman who works there says ...aren't you staying..(like I am not putting the hours in needed). She says "you couln't work these hours if you worked here"...well, da....I don't work there!! I can't work there or anywhere!!

I can't stand up!! I can't do much...so if I get there late....I still have to leave becasue my body doesn't care how much I have done at yoru facility....it just doesn't want to be upright mor than 3-4 hours tops!!!

HELP!! Why don't they get it?? DO they think I am faking? SO sick now...I like to push myself becasue I think it will help in the long run...but I am running on empty now..

Erika

[futurehope]

Oh my. I'm right there with you. It's like being abused on top of pushing yourself to the limit. We already do not have the necessary energy to function normally, so it requires sheer will power. The "thanks" we get, is, "couldn't you do more?"

We have no mental energy to deal with the abuse after using our strength to function.

Please, please, know that I know how you feel. Out of necessity, we must ignore this abuse. Can we change them by fighting or having an argument? Is it worth it?

Your only recourse is to get an "official note" from a medical caregiver as to your limitations. Other than that, {{{hugs}}}.

[Maxine]

I'm finding a lot of people don't get how sick we are. I'm sorry you were faced with more ignorance, and I know how frustrated you must feel. It's so difficult to describe what it feels like, but my best explaination is it feels like the wind is knocked out of you.

For some of us, even if we worked part time only, we would have no life after work. All of our time would be spent recovering.

POTS is a disorder of the autonomic nervous system, so just tell her that you have a chronic neurological disorder.

I have so much going on right now, that I'm just trying to stay away from TOXIC people that don't understand because they drain what energy I do have left right out of me.

For me, I received more disrespect and denial from my family then strangers on my limitations. Strangers are always pretty nice about it. What I mean by "strangers" are people in the medical profession, or poeple who I just meet who are curious, and they ask. I explain, and most responses are warm and caring. Most of my friends have been understanding also. I find that people in the medical profession who care more are either just starting out as a new doctor, nurse, or someone that works in x-ray, MRI, ultrasound, or CT.

I just got done writing my younger brother an e-mail last week---(which of course had no response). I told him I won't allow him or anyone else in my family to disrespect me anymore. If they don't believe how sick and limited I am from it, then I'll just stay away from them. My brother acted like a jerk when I told him to get his son checked out for EDS because he showing everyone how flexable he was. I think two of my brothers have mild hypermobile EDS. One of them passed away in Feb., but it was from colon cancer. He used to have panic attacks, tachycardia, and he was also fairly flexable. A couple of times we talked on the phone he brought up POTS wondering if he had it. This was a couple years before his cancer diagnosis.

I told my brother to at least get his son's aorta checked out.

Maxine :0)

[vemee]

I am sorry you are going through this, just know you are not alone and a lot of us have faced it or are facing it. I left my church several years ago because people were saying behind my back that nothing was wrong with me but I was just trying to get out of work. Why people think that getting out of work on disability is something desirable I will never know. I am trying to go into a new church but can only manage the early service. I like the people but they keep asking me to stay for Sunday school which usually is too long of being upright. It has gotten so that I don't want to do anything now because I feel I can't make the effort needed to be part of an organization. Anyway, you know you are sick and that others have the same kind of sickness so let them (the ones that don't listen) live in their ignorance. Some people don't think you are sick unless you are paralyzed unless they are the ones sick.

[iheartcats]

I feel your pain. Been there and expect to be there again.

I am not sure how I'll handle things at my next job - but I'm leaning toward the less they know, the better. I'm usually not able to do after work events/drinking/etc. Just no energy. I feel as long as my boss knows, that's sufficient. Boy I hate the crap one gets from co-workers but I've grown a thicker skin thanks to the board.

Forgot to add:

I'd trade POTS for the ability to have to do social outings with co-workers! Or work 50-60 hours a week! I'd rather be healthy! I hate that people assume I'm lazy and/or feel above them for not wanting to be more social. It's something most won't understand until they end up in our shoes...one never knows where life will lead them and I am thankful I've always been kind and understanding. At least I don't feel like a hypocrite now!

[firewatcher]

(((((((((((((((((hug)))))))))))))))))))

We understand! It is unfortunately part of a culture of disbelief: if you can't see it, it doesn't exist. Most people's views of the world are limited by their own experience. Do the best you can on the days you are able, that is all we can do.

Love, support and admiration that you are still actually chipping away at that masters!

Maxine--can I sit on the floor for Cancer, standing is difficult.

[sarahmarie43]

I'm so sorry you had that experience. I am assuming you were volunteering, in which case they should be grateful for any amount of help! It is frustrating when people don't understand and very difficult not to let it get to you. I hope it helps to know that you are not alone

[Broken_Shell]

Erika,

You should hear the "Cheers" theme song playing when you come to this website! Yesterday I was at the grocery store... blood pressure and blood sugar were low, and I wasn't feeling well at all. I got a dirty look from an elderly gentleman sitting in the chair next to me with his shopping cart and cane because I had to yell down the aisle to help my mom find what I needed her to pick up for me. His expression said it all... "you're a healthy young lady, just off your behind and do your own shopping instead of telling your mom what to do". It is SO frustrating that our families, friends, strangers, and even doctors make incorrect assumptions about our health. Just know that all of us here really DO understand and we support you 100%! As long as you know that you are trying and doing the best that you can, that is all you can do for now. I would cherish the opportunity to work long hours, do my own shopping, take care of others, socialize, etc. Remember that it is both a blessing and a curse that we can truly realize how precious these activities are! Kudos to you for going in at all to work and for continuing to pursue your masters despite dysautonomia.

Sending Hugs and Support, Shell

[Mrs. Burschman]

Gotta love invisible illnesses.

Amy

[Maxine]

Yes Firewatcher,

I think sitting is allowed for us POTs folks. I know Joe would understand.

[gertie]

People will never understand us until they have to go through what we do. I've found it doesn't matter how much I try to explain my health problems & how they effect me no one really listens. When someone asks me how I am, I say "I'm fine". That's what they want to hear. I have not been able to go to church for several years & while trying to do my grocery shopping one day I met one of the "holy joes" from one of the local churches. They started questioning where I went to church etc. I simply said I had not been able to go because of health problems. They didn't hear a word I said, just kept telling me how I should come to church. I can't tell you how low I felt by the time that conversation was over. Don't let people get you down. Ignore them if you can. Sometimes I can't but I'm trying.

[anna]

I wander if it would help if we all had an official card made to carry around to give to people, when they give us that look!.

I have a son with High functioning Autism (as well as POTS & EDS), he looks a lovely looking 'normal' lad but when young he would quit often loose it while out and about, we would get all the looks and comments going. So luckily for us the UK national Autism support group had developed a credit card sized fact card that one could just hand to people when they gave you that 'look! We got some and to be honest they have been a god send, my mum found it so therapeutic just calmly handing out these cards when needed. Most people would just back off and go about there way, some would apologize for there short sightedness etc.

So might some form of bullet point card be useful?!

Anna

[poppetkazutaka]

We need t-shirts.

Unforuntately, I don't think they make t-shirts big enough to fit all the stuff we would need to explain autonomic dysfunction on it. XD

But yeah. I was trying to explain it to my sister last night and she was asking why didn't I just take a pill to fix it. LOL. If only it were that easy.