Public perception

[labrat]

I'm new here, found out about you guys while doing research after my cardiologist told me that my symptoms were "normal". I've got all the symptoms of POTS and am currently looking for a new Dr. I work in a fast paced retail business, and am often short of breath and extremly tired. Sometimes I can just keep going and other times I nearly faint. Ex Dr. told me to just sit down and rest or stay at home on those days. Does anyone have any suggestions on how to deal with supervisors and customers who preceive these symptoms as lazy or rude?

[MightyMouse]

Please look at the main DINET site for a list of doctors who are knowledgeable in autonomic problems:

http://www.dinet.org/physicians.htm

in addition, there are several other sources for physician referrals:

http://www.ndrf.org/physicia.htm

and Co-cure, a chronic fatigue group, maintains a list. While they may not neccessarily be autonomic specialists, they may be easier to work with and more willing to learn than the average doc.

http://www.co-cure.org/Good-Doc.htm

Nina

[opus88]

Hi, Labrat!

Unfortunately, there isn't much you can do to change someone's perception. I suppose you could wear one of those handicapped parking signs around your neck - at least then they probably wouldn't question your actions!

I don't mean to be flip, but people are gonna think what they're gonna think. You could try explaining to everyone, but many people still would not understand or believe what you are saying. However, I do think it's important that your supervisor and co-workers know what you are going through so they won't be upset with you for taking longer, moving slower, taking more breaks, or whatever else you need to do.

I was a high-energy teacher, but I had to give up teaching about 10 years ago when I became too ill and too inconsistent to be successful. I now work in an office with a supervisor who trusts me to do the best I can under whatever circumstances exist at the moment. It's not always ideal, but there is a real freedom to my setting that I didn't have as a teacher. Sometimes you have to make peace with the need for change and then find the positives about the new setting.

Let us know how you tackle your situation!

[yogini]

I have been really lucky in that the people at work have been very patient and understanding. But when I have an attack and have to sit or lie down in the middle of the street, store, etc., I just say that my heart sometimes beats too fast and I am resting to calm it down. That seems to work well, and people have mostly been much nicer than expected. (Once I had to lie down on the bus and asked an elderly lady to tell the bus driver, I got berated for not saying please! But fortunately that's been the exception.)

[MomtoGiuliana]

Obviously some jobs are easier than others when you are faced with this condition. A job that involves frequent standing and a lot of direct interaction with the public is very hard if you have episodes where you need to sit, etc. I was also a teacher for awhile. I loved it and have considered going back for a Master's in Ed and going back to teaching, but, I am having second thoughts b/c of POTS. I know how much energy teaching takes on a daily basis (and how much time you spend standing!) to do it well.

Fortunately I have a desk job. It does also involve field work, some interaction with the public and testifying at public meetings. But, most of the time, if I really need to, it doesn't hurt my performance to sit down and rest for a few moments.

It is important that your supervisor be told of your condition and possible constraints, I think, so that your behavior isn't mis-interpreted. I think others on this forum may be able to guide you re disability regulations/laws and what kinds of modifications your employer may be obligated to make for you.

I agree that there is nothing you can do to help others understand, unless they take the time to be concerned. But, I also don't think that people will automatically assume you are lazy if you say you need to sit down because you are feeling light-headed or un-well. They are more likely to be concerned.

There are medications that are likely to improve your condition. Hope you can find a knowledgeable doctor who can diagnose you and help you find appropriate treatment. You probably don't have to live your life with intolerable symptoms.

Katherine

[friday]

I agree that you need a new doctor. Why should you have to "put up with" these symptoms? What kind of attitude is that. I'm sure he wouldn't just put up with it!Like someone said people will think what they think.

I know it's not easy just to change your job, but maybe you might be able to find something where the work is similar, but the pace is not as fast or where you don't have to stand as much.

Friday