But You Don't Look Sick!

[iheartcats]

I am so tired of the 'but you don't look sick' sort of treatment from people.

Any suggestions on how to deal with this in the workplace? The comments/questions/etc. I get from some coworkers...it just seems like they don't believe I have a real condition. I don't look sick and I try to keep a good outlook, be friendly, etc. (I have to work so I try to make the best of the situation).

But I don't like coworkers thinking I'm getting 'special time off' or skipping out of after-work outings for fun - I'd rather have a normal existence! I'd rather be involved, go to work, live a normal life than have POTS. My 'time off' is going to doctor visits or for being sick from POTS. Never anything enjoyable.

Getting through the work week and doing a few things around the house is all I can really manage during the week right now. I hardly ever go out with my friends!

I'm just so frustrated and this isn't helping. How do you LOOK sick!

[pat57]

In the end I think you need to validate yourself. You have to go on without their understanding. Its hard. I will say this -once they see you pass out

(or whatever ) and you say it's nothing I live with it all the time. They "get it". Then they ask questions and listen. That was my experience.

[HoudiniCat]

And the ones that 'don't get it' will never get it. They've seen me as pale as can be, dragging myself thru the office trying to work and have to lay on the floor or surely faint and some will still think I'm being a drama queen. I've worked at my company for a long time and get 4 weeks vacation. When co-workers ask what great vacation I have planned, I let them know that I take my vacation days one at a time in order to fit in all my doctors appointments - some of them 'get it' when I say that.

And the website - butyoudontlooksick.com - has great t-shirts, hats, pins, etc. that get the message across (nice and sarcastic). I keep my "My disabling chronic illness is more real than your imaginary medical expertise" mug on my desk at all times!

Hang in there.

[carinara]

Oh, i can really relate to this. I experience the same sort of things at my workplace. I try my best to be friendly and look and act as normal as i can in order to keep my job! I make all the necessary adjustments to get through my work day. I have a 11 year old daughter and iam glad, that i have to work only 28 hours a week!

Ist very hard at times and a challenge every single day! Every little detail is well thought of. If people only knew how much i need to stick to certain plans (like getting up 2 hours before I actually go to work, Get washed and dressed sitting down in a chair with rolls on and so on). When i arrive at work, i never use the stairs, i use the elevator instead. Today one of the bosses just told me that he thought i was lazy and laught at me! This happens very often. I did explain to people what is wrong with me and how POTS effects my life. Last year i was off work due to a very bad POTS episode, for almost 5 months. When i returned to work many people were interested and wanted to know more about POTS. But the more time goes by the more people seem to forget. I get asked out for meals at lunch time quiet often. When i tell my coworkers that i cant come (first i cant stand for long and eating makes me feel symptomatic as well) they look at me funny! Now i stopped telling them why i cant do things with them. They dont understand anyway. I just go to work, try to get things done and iam very thankfull for every single day i manage. As soon as i get home i need a biiiiiiiiiiig break before i can do a little housework.

Thats all for me. I never meet friends after work or go somewhere for fun, only because i have to watch my energy and my health! Tomorrow for example, a friend just asked me out for a quick drink after work! I wish i could just say yes why not. But in realtiy i know i most likely feel tired and need to rest plus the hot temperature is really getting to me. I need my rest and if i dont stick to it (like last week where i didnt get much sleep) i have to pay for it! I try not to talk about my health at work anymore

[Carly87]

"But you don't look sick" = STORY OF MY LIFE FOR THE PAST TWO YEARS!! I feel for you and everyone else too! I struggle with this all the time...I feel blessed that I am still able to continue on with a semi-normal life but its a curse at the same time. No one believes me when I feel sick, not even family members. Family and friends just don't understand when I can go out and about and be perfectly fine one day, but the next I have to reject an invitation to go out because I feel too sick. Heck, DOCTORS don't even believe me. I've had enough of it and I've just decided to live life at my OWN pace and not worry about what other people think...We all know what we're dealing with and what we have to do. If it means taking days off, passing on get-togethers/parties/etc, then so be it. POTS/dys has made me realize exactly how much of my life has been spent trying to please others...I've come to the conclusion that when it comes to my health, that is the ONE thing I need to be selfish over! Easier said than done but try not to worry about what the others think. Do what you need to do.

[nunibenuni]

I get what your saying. My friends get mad when I stop hanging out with them, because my POTS is bad. The worst is when I get suddenly sick and just won't to go home and lie in bed. My friends try to get me to suggest things that I can do. I know they are trying to be helpful, but when I'm having a POTS episode, my brain turns off! I have so much trouble when someone gives me a hard time about not doing stuff. I'm horrible at pacing, because I'm sick of the grief people give me about taking a break. I'm going to try to take some people's advice here and do what's best for my health and let my friends live with that.

[iheartcats]

I feel better in the fact that I'm not alone in all this - I also try not to make it an issue at work. I use my time off for appointments/POTS related illness and don't 'abuse the system.'

I wish I could take a half-day for a trip to the mall, drinks and dinner. But my half-days are a trip to the doctor then home to rest to prepare for the next day (or if I'm really lucky cooking dinner or doing laundry).

This is my first summer with POTS and my goodness, the heat/humidity make it worse. I thought I was bad during some really cold spells last winter. Then summer came.

I just keep telling myself I have to take care of myself (and keep my job!)...but my health really has to come first and doing whatever I can to balance work and health.

It's so hard. I feel so bad for all of us. It shouldn't be this way, really.

Not to mention - you need health insurance, so you have to keep your job, because even if you got a new job you'd have a pre-existing condition! So unjust.

[pippamc1]

Hi everyone,

its been a long time since i posted on here, but i read it regularly. This thread really got me going!

I've been this way for 8 yrs and still get the 'you don't look sick' comments. Or 'you look fine to me', or 'yes i get tired too'.

I try hard to work 18 hrs a week and had 4 months off last year and the same this year so far. i don't know how I drag myself around most of the time and often cry with even the thought of the effort involved in the simplest tasks. Even the thought of standing up makes me weep as I know how dreadful I will feel. I get back to my desk and realise I have forgotten a file and need to go back to the filing cabinet, meaning I have to stand up again. If only the fog would go then maybe i wouldn't have to stand so often!

I have to walk with a walking stick an often get sideways looks obviously wondering why such a young healthy looking individual is using a stick. I have been questioned whether i actually need it. Obviously this is from people who have not seen my frequent falls. I have been questioned about my use of a disabled badge in my car as i look like i could walk for miles.

I too put on a bright smile and try hard to look on the positive side of life, then people say i cant be that bad or i wouldn't be so happy!!! can't win.

There are very few people who really understand the impact of this awful condition, except you guys. You all understand how hard it is to get through each day, to have to consider each thing you eat in case it makes you worse or wont digest, to have to think hard if you really have to get up and go to the loo yet again, to have to consider if you can make it from the chair to the nearest thing to hold on to without falling over. I think we are all b####y marvellous.

Heres to us.

[hollie]

I've had a woman at work with a bad aditude towards me for the past few months ever since she started working with me. She treated me poorly and would make me do most of the work. I fainted in front of her about two weeks ago and now she is the nicest thing in the world to me! Sometimes, people just need to see for themselves what you really go thru before they truly understand.

Hollie

[sarct]

I love the "I've done that before" people. I swear they act like one time they fainted and it was no big deal for them, so why am I complaining so much. Try having 10-20 near fainting episodes or feeling bad in some sort of way everytime you stand or exert yourself each day.

Then I will be fine with no episodes and people will say how come you didn't do it that time? How come you can do this activity now, but you couldn't last week? Even my own husband. How come you couldn't wash the dishes last week but now you can go shopping.

Some days I am fine, but this week has been a blessing, because the temperature has dropped, but most of July and August I was laid up. I have been miserable, and my hubby was starting to wear thin.

But before when I was feeling fine I was able to reach for the stars and push myself without consequence, but I noticed this week that on the days I am feeling fine I will get into a project and wipe myself right out. I cleaned my van out, vacumming it and as soon as I was done with the floors I was done altogether. I use to be able to rally and find some reserve to keep plugging through till I finished, but no longer. When I am spent I am spent these days and I can only go lay down till I can recover which takes most of the day or the next day. My windows are still dirty and my interior needs wiping still, but I can't get the energy to finish the job. It's almost like I am developing phobias about doing things. I am avoiding tasks for fear of pushing myself too much and getting sick for it.

[pat57]

LOL, hollie

you reminded me, I had a seizure at work and some people are more afraid ,for themselves,of seeing it happen then they are afraid -for me- of it happening. These are kids tho 18 - 20ish. I scared the Dejesus out of em.

pippa,

Here's to us!

[ladyt]

hi..

I feel for u all.. I dont work, would not been abel to. ( i am very greatfull for the velfare system in norway, its not totaly perfect, but it is here.)

One positive thing about seldom be abel to leave the house is not having to hear , but u dont look sick thing. So i gess being alone a lot of the time has its advatiges.

I thing healty people dont have any clue, most of them are nice at hart, they ust dont understand. And even if they try to, its puzzling to them. Spesially if the have not heard about the thing before.

My friends (dont se them often but..), always whant me to come to town to meet them. like they are being nice to drag me out of the house.

I enoy being abel to go outs side when i can, but its hard to do so whit this body.

last couple of mnts i have gotten a new friend (not esy, when seldom leaving the chair=)).., and she visits me..!!!!

maks me so happy..

To make people understand, well some will not, even if the gett ill them self. And its weird, but if u have a diagnose as pots, it seems like a lot of people thing u can be all better ust by will. But they dont say the same to people whit more known illnes.

Its all in our head aditudud some people have is ust so enoying. But so a lot of u have said, one have to rise above it.

best of luck to u all

[Tammy]

We need to find a way to educate everyone about this illness! I see signs everywhere about "Bike Ride for the Cure of MS" or "Eliminating Lyme's Disease" or "Race for the Cure" and so on. YET, I have never seen anything about "Dysautonomia Cure Fundraiser" or the like.

[hsinthecountry]

Amen Tammy!

I know there are many (including folks associated w/ this board) that are attempting just that. A wonderful mom who has a son very sick w/ POTS even wrote a letter to President Bush about this. It is difficult for everyone w/ the illness because we hesitate to schedule dinner w/ someone b'cause we may be too sick/tired to follow thru!