"you Look So Good, You Dont Look Sick"

[cardiactec]

So i drove down to boston yesterday (a two hour drive for me) to meet with one of the research docs i have been involved in for that past year........the first thing he says is "wow, you drove down here by yourself and it's a two hour drive??" -- he looked all surprised and i just told him "yeah"....he then said "you werent symptomatic?" ...i said i was fine and wondered why so many pots patients had problems with driving -- cuz when i'm sitting, i'm fine.............he continued on with going over some research data with me and then at the end, once again, questioned my ability to drive for two hours with not being symtomatic and then said "you just look so good, you dont look sick at all, it's amazing"..............

ya know, i'm glad i dont LOOK sick and i hate how docs just lump all "POTS patients" in together and think that all of them should be on the same level of functioning and present the same with symptoms, but WE DONT! i have NO PROBLEMS when i am sitting, none whatsoever, and for some reason he was very surprised that i was able to make a two hour drive by myself and sit there and talk to him for an hour with no problems ..........especially when he says "you are one of the more impressive subjects i've seen in research in that not one other patient has come near to your 201 HR while standing, but yet you seem to do better than all of them" ..............

it was almost like he was questioning my illness?? i'm glad i dont look ill but on the same token, people dont take you seriously either when you look well -- especially when they make comments like "you look so good, you dont even look sick" over and over again. i wanted to say 'I HEARD YOU THE FIRST TIME' and then wanted to continue to tell him to walk with me throughout my day and THEN make his comments or observations -- because i cannot do many many things because of POTS, mainly working in an EP lab which is what i want so much to do! i also have little energy after working 24 hours a weeks for social time because by the time i'm done with work, i'm drained completely!

why does it feel sometimes that you have to PROVE your illness????

i hate when docs make these comments. it's like they are discrediting the reality of your illness and what challeneges you face -- all because i can sit in a car for two- four hours??? once again, everyone is DIFFERENT in how they respond in symptoms/functioning with POTS. thankfully i can drive, sit for hours on end and not have a problem.

and this is all after i tell him about how i passed out two weeks ago and almost again on monday!

[Donna F]

Yes how well I know what u mean!! I only have one doc that dont ? me, and I do drive a hr to visit him, however he has this so we know why he understands, however I was told by my mom that my disorder must be getting better yest cause i went to the walmart, wow, shes 60 and goes all day where if i get up at 8 then by lunch i feel as if i have done a days work whether sitting or washing a few dishes!

I havent saw my local docs in a while, as they make me so angry i am afraid i will throw something at them, esp when they say that u should be fine u have a pacemaker, quit being so paranoid, then i had them insinuate that i was causing symptoms and because i was unable to tolerate heat, they say i have isolated myself and should try and go to the beach,etc. Well last trip in the sun, i lost all vision and caused a big scene and the main issue is it scares my boys to death, so regardless of what anyone says i am not doing what i think can make me sicker, at least not alone. But main thing is is that we all know our limitations and these docs, if they dont have this are very unsure it is so obvious.

I also believe why they told u that over and over is some patients out of being told that may tell the docs sometimes that they arent able to do things such as drive, i drive but i have had prob occ as far as feelin like i was in atunnel and weird other things, but thank god u can drive, god forbid, they tell me not to, lets take away the rest of my dignity why dont ya!!

U do what is best for u and if u dont get the right results do as i did and find a doc even if u have to drive there, that really und that we are normally ok at a sitting position!! I know how frustrating it is, i think we all do, but want u to know that just thank god for what u can do and pray for what u cant, take it one day at a time!!

Good luck and drive on

Donna

[Ernie]

Hi,

I get told how healthy, energetic and young I look. Sometimes I appreciate it and other times I get annoyed because I don't get the help or understanding that other sick people have.

I think it's because it's an invisible ilness and also it is not thaught in med school so they don't have knowledge about our disorder. It's very frustrating for both parties.

[doctorguest]

Sometimes doctors get excited when they see an "unsual" case or presentation; they also feel happy, and at times surprised, when a patient with an illness that can impact many activities, does so well - like driving, working, etc. If he is a researcher that sees many POTS patients, it is probably a complement to hear from him that you look good and do things that are perhaps outside of the "norm" that he sees. I strongly doubt that he meant to discredit your struggles or your illness with his comments.

[kmpower]

Hi doctorguest,

Maybe some doctors mean the words to be a compliment, but others just say them to prove to themselves and the patient that the problem is "supratentorial"! Speaking for myself, I have had more of the latter than the former.

Hi cardiactec,

There is a very old thread in which a link is posted to a site about "invisible illnesses". They have T-shirts and things. One shirt I saw, but didn't get, read "But you don't look sick!"

Maybe someone can remember enough words for a proper search for the link.

OLL

[ellen]

Definitely!

I get told "you don't look sick!" repeatedly, from people who know me as well as medical professionals, especially the receptionists -I had one say, "this must be the wrong chart, it says you're fifty". And my PCP's receptionist called over another girl and said, " Guess how old she is!"

I got asked if I'm old enough to buy wine the last time I bought it at the supermarket. Ha! I not only look good, I look remarkably young. I went to my investment guy to ask how much could be deposited in an IRA annually for over fifty, (it's higher for over-fifty), and he said, "but YOU can't do that much. "

I think this is why it has been so hard for us to get diagnosed.

[doctorguest]

I understand that many doctors who know nothing about POTS would use "looks" as a component to their assessment. I also know that many of you (or most everyone) have been misdiagnosed with an anxiety disorder, at one point or another, and I am sorry that this has happened. I just think/hope that a researcher who is studying POTS and sees many POTS patients would not judge his patients and use the "you look good" as a compliment rather than a doubt of their illness.

[cardiactec]

whether or not he meant it as a compliment, it was still disheartening to me, after telling him about the last two weeks and problems with passing out , that he had no comment about it and seemingly disregarded what i had just said about it and how scary it was, by him saying "well you just look so good". it felt like he was trying to play reverse psychology or something.

i do think i function better than most, but i still have limitations and still struggle with this. i do not think it is appropriate or fair to me to discount my struggles/passing out events/etc by not commenting on it and instead, responding by repeatedly saying that i look good...

funny, i have seen plenty of people literally on their death bed and some actually DO look pretty good. does this mean they arent really dying? certainly not. APPEARANCE truely is nothing, and i'm not talking about the sprite commercial! lol.

[cardiactec]

oh yeah, then interestingly enough, he ends the convo by asking me to come back to be part of more of his POTS research testing. i felt like saying "well maybe i shouldnt be in pots research, since i am so "well appearing", or maybe i should be part of the control group instead of being the patient since you say i dont look sick"!!

...just funny he says all this but in the same breath says that he's never seen a subject so "remarkable" as me with HR's in the 200's when upright. but i guess a resting HR of 200 when standing means you're healthy.

[pat57]

I had a Dr.- one time literally shake his head in amazement over how well I was doing. Statiscally , at that time, I was in the >15% survival group. I was not only survivng I was "well". It shook me up to hear how great I was doing because then I thought it was a fragile wellness.

My point is that the fellow remarked what he knew, saw, and experianced. He was happy for you. (as my dr. was). I do not think either of them could predict the emotional reaction it could cause in the patient.

I echo what Doctorguest wrote.

[corina]

cardiactech,

i do know what you mean when you feel you have to proove your illness. still, i do think that people (doctors or others) have the intention to compliment you. i have felt offended too but later i learned to take it as a compliment and when people (doctors) tell me that i look so good, i smile and thank them for their compliment. can you imagine my neuro, who once told me how mcuh he liked my wheelchair (just a very common deep pruple one)

i answered "oh yes, how lucky i am". of course he didn't mean to be rude, he just wanted to say something nice but sometimes can't find the right words to say.

if you could take your doctors words as a compliment it will be much easier on you, that's how it worked for me. maybe it could work for you as well.

take care,

corina

[cardiactec]

dont get me wrong that i am certainly happy for what i am able to do/function. it is not that i WANT to be sick, but because i am, it's nice to have someone recognize WHERE you struggle, not necessarily how functional you are.....

.... we all want to be heard, and when speaking of such critical matters like passing out (and also because this is new for me, this isnt something that i have gone through a gazillion times ) - i expect that not to be disregarded and felt that it was, in all its seriousness (at least from my standpoint, it feels serious), with comments about "looking good" and "doing so well" being made directly after i had just voiced my concerns over syncope -- it was like he wasnt listening to me, or diregarded the events, when i had JUST stated that i WASNT DOING SO WELL, and was having problems with passing out.........

i'm glad i look good, no one wants to look ill, but i want to be taken seriously when it is time to be taken seriously. and the time to be taken seriously is most certainly when discussing things like syncopal events!

perhaps because he is just a research doc and doesnt necessarily carry out any true medical relavance in regards to follow up appointments/treatments,etc with me, i shouldnt put any stalk in what he says. now if all this happened with either my cardio or neuro, i would not be impressed at all.

-cardiactec.

[pat57]

I'm with you on that. We want to be heard. It seems the nature of apptments. Theres no "relationship" - your strangers. Theres time contraints. And an agenda. Not condusive to communication.

[morgan617]

I'm not sure I'm supposed to post this? The rules tend to get jumbled. cafepress.com has many articles for "invisible illness" like t shirts and things. I have a few. A warning, they have a lot of stuff that can be seen as inappropriate, so be forwarned. Just make sure you go to the invisible illness section.

Regarding "you look so good" I used to get really upset by that statement, as it felt like a total invalidation. I now have learned to just think about the person saying it, how well I know them, and where they might be coming from. I also agree with doctorguest. Unless someone says to me, anymore, how can you be so sick when you look so good, and what they mean is, I don't believe you, I just shrug it off.

I think many times, people just don't know what to say, whether you look like death warmed over or like a normal healthy person. They actually believe that something that feels like invalidation to you is going to make you feel better. It makes THEM feel better to say it. In the last year or so, people never tell me I look good anymore and I'm not sure I like that either! lol

So sometimes the people on the ouside of this can't win either....But I believe all of us totally understand how it made you feel. My suggestion is just to tell him he made you feel invalidated by that statement...he probably was oblivious to what it did to you. I told a GI doctor I just couldn't eat anymore and was losing weight. He said "you have a long way to go before you need to worry about weight loss!" and then laughed. When I confronted him about it at my next visit, (I was furious with him for two months and just let it fester) he truly never remembered making the statement and was mortified he had hurt me in any way. It wasn't intended as a fat joke.

Now he is constantly telling me to put on weight and I always say..."but I still have a long way to go before we have to worry about it, right?" And we can laugh about it.

I can only tell you, with time, I have learned to let these things go, they are a waste of precious energy and we can't really know what a person means by what they say, unless we ask them. But I also understand the frustration of it.....

[P SUDIK]

I get this all the time,I guess I should'nt let it bother me but it does.I feel like I always have to prove myself,that is prove that Iam sicker than I look,is'nt that sad? I am basically homebound,the only thing I can do away from home is go to the dr.I envy those of you who can let all the dumb and rude comments we get, go. I can't used to the fact that "nobody gets it".I am so grateful that I have all of you to talk to. So thanks to everyone, Pat

[flop]

I mostly get told how white / pasty / ill I look so it is a nice change when someone says I look well. Unfortunately when they say it is usually when I'm feeling particularly bad. I think that perhaps they think "doesn't she look awful" but want to say something nice or distract you from feeling ill.

I try to treat those comments the way I do being asked "How are you" - I just reply with "fine thanks" or "not so bad" as I have learnt that people aren't really interested in how you feel they are just making polite conversation.

I know how upset you must be feeling with this "just a research doc" but please give him the benefit of the doubt and stay involved in his research - you never know it might lead to a breakthrough in our treatment.

One website I've found is www.butyoudontlooksick.com I'm nothing to do with the site and am not trying to break any forum rules. There is a good analogy on the site about "spoons" - how a lupus sufferer explained her limitations to her best friend.

I hope you don't stay angry with the doc for long - it's not worth the energy,

Flop

[Maxine]

Hi Cardiactech,

Although I know how grateful you are to have some ability to function, I know how much of a struggle is must be. Just the part time hours you work every day can drain everything you have, then when you get home there is nothing left for any little bits of social life, family, friends ect.---------------not to mention trying to take care of your home.

I was lucky in that I did not have disabling symptoms until I was in my 40s. When I crashed at age 41 I was working. It was horrible, and I missed a lot of work until I became bed ridden and couldn't work. Although I "look good", I literally feel like I'm coming unglued on some days from the EDS. I'm sorry your Doc said this, but hopefully he didn't mean any harm, and he was just happy for you that you are able to function to the degree you do.

My body feels like a train wreck inside , but I look healthy on the outside-------

Here's a switch------------When I first crashed I lost 25 pounds, there was muscle waste in my legs, I was pale----(and some the docs I saw still said I looked good------

Maybe it was a compliment---- Maybe he meant it to be nice. I kind of understand the other view point too-----that maybe some people or doctors know you feel bad----and feel that maybe a compliment might cheer you up. You have to live in the chronic illness world a while to know what saying, "you look so good" feels like. If this doctor has a lot of experience in knowing what chronic illness makes a person feel like, he probably meant it as a compliment.

I hope the research doctor DOES believes you, it seems like he does, because he wants you to come back for a study.

Maxine :0)

[Eli6596]

I just received this same exact comment yesterday. I think that a lot of people feel uncomfortable when we are talking about hardship. They are struggling in their minds for the correct thing to say. They want to say something to make us feel better. I don't think that they realize that someone would NOT want to be told that they look good. This is especially true in a society that is so focused on appearances.

Most people who have made this comment to me really have meant no harm. I try very hard to pick and chose what I will be upset about because any negative emotion makes me feel really sick from the POTS. The luxury of my anger is simply not worth the wasted energy especially when I realize that the person did not say it maliciously but rather out of lack of insight.

I would cut the researcher some slack. I bet he was just excited and amazed. He is just trying to make sense of you in his mind.

I remember there was a poll about POTS and looking young. Most of us do look young. That would be interesting research especially since most people would kill to look young for their age. However, I rather look my age and NOT have POTS, of course!

I have complimented people on their pretty, souped up walker before. So far, it has been taken as a compliment. It is just nice to see a walker that looks techinically advanced so that it could help the person better. Some people also individualize their walkers with handmade items.

Karyn

P.S.

Doctorguest, are you a physician?

[flop]

Karyn - you guessed correctly, doctorguest is a physician.

This is quoted from an earlier thread and was posted by MightyMouse:

"I just wanted to say that our new member, doctorguest is a medical doctor who cares very much for dysautonomia patients and specializes in treating them. This doctor has helped DINET out A LOT and we are grateful for that... and appreciate the participation of all members here, new and veteran".

Flop

[Eli6596]

Flop, thanks for the info. I have found this site to be incredibly helpful, both as a fellow POTS patient and physician. I try to come here primarily as a patient, and not as a doctor since I too need support and comraderie due to this illness. It is nice not to feel so alone with so many wierd symptoms that are sometimes not in textbooks. I do get tempted to make comments from the physician side of me from time to time.

Doctorguest, I sent you a personal message. I mention this here because I don't know if it reached you. This is the first time I have tried this computer feature. I had difficulty even figuring out how to check my inbox, and found very old unchecked messages.

Karyn