You Dont Look Sick

[ken870]

how many times have you all been told by friends and family that you dont look sick when you are so dizzy you feel like you are going to faint and also you have pain that is unbearble and your chest feels like your heart is about to come out of it cause it is beating so fast.

[flop]

That happens to me all the time. I've learnt to just smile and say thank you, sometimes I'll say "looks can be deceiving" but I don't usually bother.

If you haven't yet read the spoon theory then read this link for a story that should make you smile and nod in appreciation.

Flop

[MelissaCrystal]

I think every person I know has said this at one point.

[Ernie]

Hi,

I am not counting anymore.

[Sunfish]

yeah, i lost count about 10 years ago. i'm in a wheelchair out of the house, have IVs running all of the time that hang on the back of my chair, & have a tube that drains from my stomach and people still tell me that i don't like sick, that i look great, etc. on one hand it's true that i DO look much better than i have at some points in the past few years, i.e. when my weight is down more, when i'm more malnourished, when i'm in the hospital or just have gotten out, etc. but it's still frustrating. if people are saying it to me though with all of my "accessories" they're going to keep saying it. so, as hard as it may be, it's one of those things you need to develop a thick skin about.

for friends & family that are an important part of your life it may be worth explaining your situation to them but for those you just see in passing it may not be worth the energy. like flop suggested, there are short comments that can be good to use as a response without having to go into a lengthy discussion. i sometimes say similar things but it depends on the situation.

hang in there,

melissa

[dizzygirl]

all the time..

[Michelle F.]

FLOP- Thank you so much for sharing the link to the Spoon Theory! It really touched me and I think I will always remember it.

Michelle F.

[pat57]

That's interesting. You potsies don't turn white then. Because when I feel faint I turn white, people can see it.

NCS no POTS - here.

[Sunfish]

pat et al -

i'm not a potsie, but i'm definitely pale, and turn various shades of paler &/or gray &/or green at times related to exacerbations of various things in my body. i have dark circles under/ around my eyes as well that vary in degree/ prevalence but are always there no matter how much sleep i've had. i never wear much make-up, but when i do brighten up my eyes & put a little color on my face (we're talking a 5-7 minute job max) i've wondered if the fact that i'm masking my paleness & dark eyes backfires in that it actually elicits more of the "you look great" comments. at times, most often related to nutritional issues for me (or lack there of) &/or lower weights, my face will also look sort of sunken in, but i've still gotten many a "you look good" comments from people who aren't close to me.

that said, none of us are fainting or about to faint 24/7 (though, yes, i realize that some feel this way!) and many, if not most people aren't particularly observant so i don't think that people getting comments of "you don't look sick" means that they necessarily have the most robust coloring, particularly just prior to a faint. my closer friends & family tend to be able to read my coloring better than random "people on the street" and can often tell if/ when i'm in worse shape.

by mentioning all of my "extras" (IVs, tubes, wheelchair, etc) in my earlier post, however, i was trying to emphasize the point that some people are going to make the "you look good" comments no matter how much evidence there may be to the contrary, be it IVs, wheelchair, ghostly paleness, or anything else. so i'm pretty sure that most of us who are chiming in here with "me toos" aren't saying that we don't get pale.

in thinking things over myself as well as gleaning from the experiences of others over the years (both those giving & hearing the comments), there seem to be several different etiologies to the "you look good" comments that so many of us hear and, quite often, find frustrating &/or invalidating. by "you look good" i'm referencing any such similar statements of "you don't look sick" & the like. for some that make the comments they may be trying to say, in fact, that they don't think we look sick in a very matter-of-fact way, though for us we tend to assume emotionally that they're trying to tell us we aren't or can't be sick. while i'm sure there are some people who are trying to tell someone that they aren't actually ill, i genuinely believe that MOST people aren't trying to be judgmental but just observational or even complimentary.

i've heard many "commenters" articulate that they genuinely think they're giving a comment; these people are often shocked to find out that most people with invisible illnesses detest such "compliments". along similar lines, some people's "you look good" comments are intended as compliments in contrast to times that they've seen the person not looking so good. earlier this summer i had an aunt (who happens to be a nurse) overhear a conversation i was having with one of my cousins, a new nurse who was particularly interested in asking me about some of my health issues. in hearing us talk about the blessing & curse of "looking good", she interrupted to let me know that when she'd told me earlier that i "looked good", it was only b/c she had seen me the night before & thought that i'd then looked horrible, and was so happy that i was, at least in some way, having a better day! hearing the "full story" changed my brushing off another one of those "you look good" comments (that make me wonder if people have any clue what i deal with & how i feel) to realizing that my aunt had been observant enough to notice what a rough time i had been having the night before. a totally different meaning to the same comment, & one i'm glad to have gained insight on...not so much b/c of that particular person's comment but b/c it reminded me that the infamous "you look good" comments may, in many instances, be a matter of relativity (similar to when one of my ICU nurses saw me a week later, still very ill & in critical care, & told me how excited she was to see me "looking so good". obviously there was no doubt that i was ill...i just looked so much better than i had when my life had been on the line days before.)

if you think about it, we probably wouldn't be much happier if, on a regular basis, people told us that we looked like crap, looked horrible, looked really sick, etc. what it is most of us do want, if i may hazard to guess, is validation that we're sick &/or acknowledgment that we may not feel half as good as we look. ultimately, though it's probably wise for us to realize & then remember that most, if not all of the people who are doling out the "you don't look sick" and/or "you look good" comments aren't thinking or implying that they don't think we're ill; they're most likely just making an observation, lamely filling empty conversational space, or trying to pay a compliment.

okay...enough ramblings for me for the night. i seem to be on a bit of a soapbox spree (if you're wondering what i mean, check out last night's "i'm never bored" post!)

melissa

[ken870]

what really gets me is that i can be feeling bad all day and be running a fever of 102to 103 and someone would come over and say what wrong with you you dont look sick and one other thing is what can you tell visitors who come over when you are feeling bad and they stay as long as six hours a visit.

[pat57]

When I feel faint, I do faint. Invariability the bystanders are more freaked out then I am. Also I get a lot of ,"you turned white as a sheet."

People who haven't seen my act may tend to think I'm well, or exaggerating my struggle with the sensation of heavy legs. I no longer care what

these people think, I tell them whatever is pertinent. I could care less if they believe me. However this indifference to others opinions is an acquired ability.

Stemming mostly from the fact that I'm 51 and I refuse to let someone ruin my day. I will sooner write them off as a jerk then let it bother me. In the end I know what I'm talking about- they don't. And I do try to be nice but I will tell them flat out- I don't have the time the inclination or the energy to debate.

It seems to me my attitude is really the most convincing factor. One thing I say often at work is, I can't stand still, it may cause me to faint which is way I wear these. (I point to compression stockings- at the ankle. ) There is no debate. I can see them thinking but there is never a reply. I state it clearly as fact. Everyone knows thaT i MANIPULATE MY bp THROUGH movement, my extended family seems to look askance at my difficulties sitting through a long meal. My immediate family have all seen my act. I don't need anyone elses support!

I myself make judgments based on visual cues all the time. There is no doubt that I judge many an ill person as well. Starting with my own children when they want to stay home from school- sick. So I don't mind that others think I look well, but I do mind if they choose not to believe something I tell them.

[MelissaCrystal]

That's interesting. You potsies don't turn white then. Because when I feel faint I turn white, people can see it.

NCS no POTS - here.

What's funny is that I bet you if I didn't wear makeup, I'd get a lot less comments about me not looking sick. I don't look too good without makeup, hah. Pale lips, ash white face, and my eyes are light colored so they make me look even more pale with nothing on my lids. I should post a photo-tutorial on a before and after makeup.

[pat57]

That's a good point Melissa.

[Sunfish]

yep, i agree about the make-up issue. i actually mentioned the same thing (about a bit of make-up likely causing more "you look good" comments) in my ramblings above, but writing so much tends to keep people from actually reading my posts so your got more to the point! well done:-)

melissa (the other one)

[pat57]

I did see that Sunfish, and took it that you meant "you looked well "generally, to others when wearing make-up.

It was after my second post that MelissaReid replied even tho she quoted the first post that I thought make-up might mask the "white as a sheet" skin

during an episode.

Hope that splains it well enough. I am not a good communicator - generally speaking. Partly because typing is laborious for me. I enjoyed your "I'm never bored post" which I throw out there because I want you to know, I was at least trying to pay attention to what you wrote. I went and checked it out, and read the WHOLE thing. Now that is an example of some fine typing skills!

Speaking of that post - and I said this to you when we first "met". You have a lot to offer the chronically ill- having walked a path others will and being able to

express so much so well. I think your journaling should be seen by a publisher.

[Sunfish]

hi pat -

sorry if you thought i was trying to imply that i didn't think you and/or others were paying attention to my ramblings. i was really just trying to emphasize my agreement with the makeup issue (it covering up the pasty white paleness we're speaking of that at least some of us seem to share) while poking fun at my lengthy posting nature.

i read every post on the forum & i have NEVER thought for one minute that you're not a good communicator. we all communicate differently, and while i enjoy writing, i actually admire those, including you, who have the ability to chime in with comments that are "short & sweet", ya know? it's something that's in fact very difficult for me and that, at times, would be a nice skill to have! bottom line is that, in my opinion, for what it's worth, i think you communicate just fine!

and bravo on making it through my entire post! while i don't have any qualms that i'm an okay writer on most occasions, i do wonder at times if people have the energies to make it through some of my longer ramblings. not something that i take personally by any means but simply an acknowledgment of the fact that longer posts take longer, and in turn more energy, to read. i know when i'm more wiped out physically and/or not at my best cognitively i'll often save longer posts for later and/or skim them over rather than reading them more thoroughly and can only expect that others do the same. sarcastic humor doesn't always come across too well in writing though so i may have miscommunicated myself a bit in the process of trying to give folks at grin. sorry!

thanks too for your accolades & encouragement. i don't say it lightly that it means a lot to me as, in the midst of not feeling that i can "do" much at times, i hope that what i have to share in less tangible ways, i.e. through writing, might be my way of "doing", giving, contributing, etc. i feel very strongly, and have been encouraged by others, that i'm still here for a reason and have wondered at times if writing might play a part in that. i need to work on managing my time & energies better so that i write more & make some efforts in "getting it out there", i.e. some publishing opportunities, and your words, along with a few others that have come my way recently, may help nudge me to do that. so thank you. one of my doctors put it to me a few months ago that i "owe it to the world" to write about my experiences, and while her words have stuck with me in a powerful way i'm ashamed to say that i've done very little to act upon them. i love to write & never regret it but, in part b/c once i get going i have trouble exercising restraint, i have difficulty integrating any sort of regular writing into my "schedule". ah well...maybe your words will be the extra little push that i needed. but whether they are or not, thank you for them.

last but not least, i COMPLETELY concur with your post re: refusing to let someone ruin your day. i feel exactly the same, and while i have to admit that my emotions don't always follow suit instinctually, what might have ruined my day many years back is now likely to only "ruin" perhaps a few minutes of my time. you explained very well the reasons why there's simply no point, though while you mentioned that your age may be part of the shy behind your wisdom, i'd offer up that it might be just as related, at least for me, to the years i've been dealing with illness. i've talked to people older than you (60s & 70s) who are certainly not as wise when it comes to dealing with illness & interfacing with the world, and most of the time they are individuals for whom illness has only recently entered their day to day reality. that said, i'm sure that some people, regardless of age or time spent with health issues, won't allow themselves to learn or grow or rise above the difficulties of dealing with others or of illness itself just the same as, conversely, there are certainly some younger folks who are fairly new to illness and yet still wise & mature beyond their years. all in all, though, i'm glad that you don't allow others to ruin your day. i'm sure you've found, as have i, that it is a MUCH better way to live, and hope that others who aren't there yet will be able to get to the place where they feel the same way.

now, as i've once again proved my incapability of writing a quick post, i'll call it a night. while i'm thinking of it, though, how is work going for you these days? i hope i'm not mixing up work situations with someone else, but are you still working the more regular hours on a schedule that's "easier" - relatively speaking - on your body? i was always amazed at your ability to keep up with the hours you worked previously; that sort of thing is rough on the healthiest person, not to mention someone with health issues!

melissa

p.s. to any & all - after trashing the possibility of wearing any make up whatsoever for years (other than chapstick!) i decided a year or so ago that i did want to add a bit of color to my pastiness and, as such, have since come up with a super quick routine with products that i love, leave me looking healthier without looking like i'm wearing too much, if any, makeup. in other words the au natural look, which, at least for me, is preferred. if anyone's interested in any suggestions feel free to PM me....it'd be sort of fun to have some non-medical chatter in my inbox! )(and no, i'm not selling anything!!)

[corina]

hahaha melissa, i'm glad you explained that you're not selling, as new people might have thought you'd started a new career

i just wanted to add here that i've learned to take phrases like: you don't look sick or you look good/better/great as a compliment. i think that a lot of us feel "attaqued" (sorry, not sure i'm using the right word here, hope you understand what i mean) when people make these remarks as we ARE dealing with chronic illness and we're not suddenly cured and look GREAT again.

but i can't read peoples minds (i mean that i do not know whether they suspect me of "making things up", or simply mean what they say) so when someone tells me how good/great or whatever i look i take it as a compliment and tell them: well, thank you so much, you've really made my day! and it really helps. it is so much better than feeling offended. and don't forget that there are always people who just want to be nice to you and can't think of anything else to say. just give it a try and see how it works for you!!!

take care,

corina

[jump]

You know, I feel really relieved that people don't think I look sick all the time.

I, too, hate it when "You don't look sick" is used as an accusation, or suggestion, that you're making it up. Or as evidence that you're making it up.

But at the same time, I'm guilty of a similar crime. A close friend of mine has cancer (and is obviously very sick). She's lost her hair, she's skinny as all ****, she has a horrible surgery scar. Yet when I see her I often say "Hey, you look great!" Obviously she doesn't look great as compared to healthy people. But on days when she's looking great for someone so sick, or on days when she's looking better than she did before, I usually say something. She knows I mean it as encouragement, not that I suspect she doesn't really have cancer or that she's making it up, and she always appreciates the compliment even though we both know there's something a little ludicrous about telling a bald, pale, skinny woman that she looks great. She knows it's a compliment because there's no unspoken question in the air about whether or not her illness is legitimate.

I wonder if sometimes people tell us we look well or don't look sick because they know we have a chronic illness and they're trying to make us feel better. Kind of like saying "well at least you don't look as crappy as you feel," in a supportive or attempt-at-helpful way. Because we've also had so many people just not believe us that we're suffering, maybe it makes us take the occasional well-intentioned comment as an accusation.

jump

[ken870]

i think when people tell me you dont look sick they are saying that you are just pretending to be sick because they dont think that pots is really a disease and you are just wanting attention.

[Katja]

When people comment that my grandmother (who has similar, presumably ANS issues) doesn't look sick, they almost always mean to say that they don't think she really feels as sick as she or my grandfather say she is, and/or that her problems are just the result of somatization or overreacting to benign physical symptoms, or whatnot. Mostly she gets this from our family, others tend to be more considerate . My father's wife used the same reasoning to ignore my father's severe hypertension. I don't usually get it because I typically do everything to avoid telling people that I'm sick in the first place. Sometimes I get this comment from my mother when I have to tell her that I can't do something, but she usually retracts it after I explain to her what the physical symptoms in question are, and show her what happens to my blood pressure and pulse rate upon standing up (numbers always work with her).

[pat57]

Hi,

Melissa,

Yes that was me with the better work hours. I used to go to bed about 2am get up at 6:30 get my daughter to school and get more sleep after that. I never felt well, never.

When I complained to my Dr. he said I needed 8 hours consecutive sleep. Huge difference. I love my current job. - most of the time!

I'll send you a message re publishing.

Thank you for the kind words about my success in communicating.

Since you read all the posts- no wonder you are, shall we say- tuned in -to how long or short some are.

Lastly, I think I'm guilty of pretty much any defect or shortcoming socially. I will say on relatively rare occasion tho. Anyway that helps me let things go too.

Speaking of social issues here's something I still LOL over. Nina came in where I work. I said to her, "are you Nina" and while she was looking to see if she was wearing a name tag- OR WHAT, I gave her a hug. In the mean time she was receiving it from a perfect stranger. LOL, I realized after the fact what I had done.

[Maxine]

I always get that "you look good" from all kinds of different people, and despite THIS, I continue to wear makeup. I'm pale by nature weather I wear makeup or not.

When I first got sick, and was bed ridden I still wore makeup. It made ME feel better, but I have to admit it fooled the docs who I was tried to convince how sick I was--------------they just didn't take me seriously.

We have an ignorant and shallow society that is based on appearances.

I've seen people with nice curves, rosey cheeks, and nicely done makeup who were very sick with heart disease. I have also seen people I would never think had heart disease because they were thin & exercised, but had four major arteries clogged.

I was judged by "appearance", and misdiagnosed as NOT having EDS-----------------NOW, just look what EDS has done to me. I continued to pursue the right help, and I'm glad I did.

I don't give a you know what my family, friends, and the puplic thinks anymore (I used to let it hurt me)-----I'll still do my best to "look good". They didn't believe how sick I was no matter how I looked----pale, or wearing makeup----------------not even when I lost 25 pounds in four weeks.

Just two nights ago my niece said in an accusing way------(how can you bend like that, when you have such a bad back?).

My lower back isn't as bad as the rest of my back. I'm hyper mobile, that doesn't mean I should be moving in the ways I move because I can. I function the bast I can------people bend without thinking, and if I get away with it at the time----good for me.

I'm a person walking around who gets every move I make scrutinized from everyone from Doctors, nurses, to family and friends, so I might as well "look good" while I'm being scrutinized----------

Maxine :0)

[corina]

hooray for you maxine!!! this is exactly what i mean: don't let other peoples opinions inlfluence your life. do what is good for YOU and try your best to make your life worthwhile for YOU. i know that at times it is very difficult not to let others "take over", but we need to stay as close to ourselves as possible.

i've learned that when i thank people for their compliment, even when i'm very sure there is an accusing tone in it, i stay nice and friendly which makes them shut up. this way i get what i want: i stay close to myself being nice to people and THEY keep their mouth shut.

keep up your chins, fellow dysautonomia-pals!!!

corina

[lmbutare]

I definitely agree with what everyone has said up until this point. I haven't had anyone specifically say "you don't look sick", but they often say "you look good" or "you look great" and I think it is because they want to be able to say something positive to me. It's amazing how the exact same phrases can mean different things depending on how they are said. I am also extremely pale, and I know that I have had someone say that I look good, but then comment to my Mom that they are concerned with how pale I am. My friends and family tend to not want to say anything negative to me I think and want to say only positive things b/c they think that helps for some reason. I try to always take it like they mean it in a good way. I actually have a blog that a bunch of my family reads and I specifically addressed how hard it can be to hear certain comments and what they shouldn't say to a person that has a chronic illness. hopefully that will help us to a degree!

[Tammy]

I know what you all are saying too. Frequently people say "Oh, you look good today, you must be doing pretty good today" as I'm feeling terrible and about to be sick to my stomach, etc. BUT, I must admit, that if they were to say "oh, you look terrible, you must be feeling so sick" I'd probably want to smack them too! I myself try to say positive things to people even when I know they are feeling unwell as this is what may help them cheer up if they are struggling with the day. Thank God we all have support here where we can say how we are really feeling and know that we all understand.