Are looks everthing?

[ndngi]

I went to a new Rheumy yesterday and to be quite honest, I feel a little discouraged. The appointment was pretty much standard for a first time visit. As we were going over the symptoms, medical records and lab reports...the Dr stops and looks at me and says that I don't look sick enough to have Wegeners. I was taken back by her statement and I'm sure the look on my face told her that b/c she quickly followed up with saying that most patients with Wegeners look really sick. I don't really know how to take this???????

[Alysia]

Hi,
I have WG for almost 5 years, not yet in remmision even. nobody can tell that Im so ill. my nose became saddle but people dont see it because of my glasses. no one can see from the outside how my lungs are full of scars, how my nose bleeding, how my ears aching. no body noticed my fingers when my joints are red and swallow. nobody can see how tired I am. in fact, Im looking better then before because Im 13 kilo less,so I look healthy. but Im not.
Im glad nobody can tell by my look. I work with people, in close emotional intimacy. they dont notice. only 2 of them know that I have some illness. it is better to me to keep my WG as a secret in my work place.
enjoy the fact that your WG is not "written" on you. but insist on getting best treatment from your doc. good luck.

[HopeinTN]

I think that most of us have gotten that comment at some point and I hear it a lot. I will take this as a compliment, and a curse to an extent. It's hard to explain thsi disease to anyone and this is one aspect that is hard. Glad we don't look sick, but tell that to my body. It also makes diagnosis tougher for non-wegs doctors as they overlook it since we look fine.

Maybe it's their way of making us feel better? Who knows, but I'm glad they don't say "you look like crap or death"!

[mishb]

I totally agree. I rather like the fact that I don't tend to look sick.
At my workplace, nearly everyone knows that I have WG, and the only way they can tell if it is a bad day for me, is if my eyes are red.
That is normally the telltale sign that I'm not feeling very well that day.

It certainly is a much nicer compliment than .....you look like death, or as already said......boy you look like crap. That wouldn't be too good, if you thought you were actually feeling a bit better.

Yep, I certainly wouldn't worry about someone saying that I looked to well.

[drz]

If only we could feel as good as we often look. I too am glad we often don't look as bad as we are since that would even be more discouraging. I think it is fine to look healthy as long as we remember we aren't and keep up with our medical treatment routines and necessary monitoring of our health. Denial can be fatal for us.

[JeanMarie]

I with everybody, except for one thing. This is a rheumy's comment--shouldn't a rheumy know better? (Wow, I'm really critical-I'm gonna blame it on the pred.)

[carriej22]

That is a bad rheumy. Get a new one!

It's an invisible disease.. Hell I wish I felt half as good as I looked, I'd be running marathons! Even when I was near death; I didn't look sick... I was barely able to walk for my wedding and you would never know something was wrong with me by looking at my wedding pictures (diagnosed 10 days before wedding).

[zizzcat]

Hi Alysia!

i'm for the time being being treated for a general but severe type of connective tissue disorder.
when I've expressed my concern about Wegner's to drs. They also have told me that I don't look sick enough to have Wegner's. this has occurred three times. The last dr., was the resident dr. at the teaching hospital where I am seen. I told her about the lesions in my nose and my throat closing up and she told me that Wegner's had nothing to do with inflammation of the throat and that if I had Wegner's I'd be coughing up blood and bone. I did some research and found that my ENT was right and that Wegner's does affect the throat. There had been other instances in which she seemed to be closed to what I was trying to say, so I called the patient relations department and asked that she be removed from my case and she was. Fortunately, the doc who oversees the resident doctors is very knowledgeable and has lots of experience. On the flip side of that, I've had drs.. who upon noticing my psyche meds, have told me that I look like all I am is depressed.
go figure.

Hope

[annekat]

The comment about you not looking sick enough to have WG was not only inappropriate, but BS. Looks are NOT everything! Severity and variety of Wegs symptoms are all over the map, as is how people "look" who have it. She had the lab reports in front of her, she knows you have WG.... maybe she was surprised at how well you look, but the comment was careless and stupid.... at least it sounds like she tried to backpedal a bit and maybe realized it wasn't a necessary thing to say. I can't say whether you should look for someone else, since you must have been referred to her for a reason... maybe give her another chance to prove she is capable. But it seems like someone who would say that would not be very experienced with WG, and if she isn't, you probably need to look for a specialist or make sure that she consults with one.

[Barbara N]

Everybody looks at me, or trys not to, because it is obvious that something is wrong with me. I don't have a face. It used to really upset me the way people would stare but now it doesn't bother me so much. Most of all, I like it when children come up and ask what happened. You don't want to scare them so I always tell them that this nice doctor is going to make it better. It is so easy for children to open up, they might have a moment of shock but if they like you they like you doesn't mater what you look like, animals the same. Who cares what you look like it's who you are that counts.

[Meode81]

I can totally relate. I look perfectly normal except for slight puffiness from the high dose of steroids Returning to work after 3 months was hell. I had my lund removed, and dealt with unimaginable pain (still do) and coworkers kept telling me how i look fine. I was so angry. I didn't want to talk about what I had just gone through with the surgery and my recent diagnosis of Wegener's... people can be so UGHHH sometimes. Even my doctors day it.. oh you look great.. you will be fine soon. ugh SHUT UP I AM NOT FINE!!! lmao Please know that you look fabulous but we know the inner pain your going through. STAY STRONG!!!

[Psyborg]

My guess is that when people say this they are trying to make you feel better. I mean that and our disease is annoying int that unless you are flaring pretty good you look generally "ok". Of course being the bearer of this fine condition we never feel as good as we used to seemingly so it's aggravating when people make those comments.

Actually I have felt pretty good on a few occasions so I guess in theory I should say 'never'.

[annekat]

I actually feel pretty good lately a good part of the time. So if I can say I feel good, I guess it is OK for people to tell me I look good. But I still have bad days. I think people are not only trying to make us feel better, but also to tell themselves that we must be pretty much OK so they don't have to worry about us so much. I agree it is annoying for them to be so cut and dried about it, not understanding how complicated and variable the disease and the treatments are, and that we are not always feeling the same from one day to the next. Sometimes the least stressful tactic for us is to just roll with it rather than trying to explain.