posted
I started thinking about this last night. What are some of the diseases/conditions you cannot see? Just for arguments sake when people say things like, 'you don't LOOK sick.'
I was also thinking that the list might be shorter for things that you CAN see.
So feel free to list things you can and cannot see. Be sure to separate them. I know there are A TON of diseases and conditions out there.
Thanks!
-------------------- I am so sick and tired of being sick and tired!!!
posted
Other than things like amputations and skin diseases or infections, what else can you really see?
Things that make you look sick: Head cold, stuffed up nose Bad hangover
You can look healthy with: Cancer of various types High blood pressure Type 1 diabetes Vascular disease until the MI happens Severe depression right up to the day you commit suicide
I agree with you - there is not much you really CAN see, and many times the conditions that you can see have a better prognosis than the ones you can not. Poison ivy can make you look worse than some chemotherapy treatments, but I sure know which one I would rather have.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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posted
I think that is one of the worst parts of this disease. You might feel like you are dying, can barely walk and just want to crawl back under the covers, but you look fine!!! It's not fair. Sometimes we just want someone to acknowledge our misery, when it feels like they are minimizing it.
But I think it's also a way for people to be nice. You know, even if you don't feel good, they think you'd like to know that you still look okay!
Posts: 236 | From Washington | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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when people say things like, 'you don't LOOK sick.' they don't WANT the truth.
Drop 'em.
Find good friends who can handle the truth.
It sounds harsh but, I have never seen one person with that attitude to change their minds just because I offered an explanation.
I am happier without them in my life. If they want to step up to the plate, great. But I don't have to bend over backward to prove my worth - even if existing in a state of compromised health. I don't need anyone's approval or even blessing (which is often condescending).
This is what it is. I do the best I can. That has to be enough as the basis for any of my personal relationships. Period.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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quote: So why do us Lyme sufferers always hear, 'you don't look sick.'
Because you don't look sick Most people that have not personally experienced chronic illness (themselves or somebody close) just have a limited view of the world - they look sick when they are, and look healthy otherwise.
What is unsaid is more important - and you do not always know if the unsaid part is 'you are faking it' or 'that must be a terrible thing to have happen to you'.
Maybe the best response is 'Thanks, you don't look ignorant either.'
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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posted
Someone who knows I have lyme wishes to have drugs like mine so her skin would look as good as mine apparently does.....
Posts: 234 | From BC Canada | Registered: Aug 2008
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I'm sorry as I know sometimes this is one of the most frustrating things we have to, or have dealt with!!!
Why do we have to convince ANYONE that we are sick?????!!!!! I know everyone already knows this, but this is why most have gone for so long w/o being dx, or told the all famous, "It's all in your head!!"
I can't speak for everyone, but a lot WORK VERY HARD TO NOT LOOK SICK!!!! I know I did!!! For years and years I tried to 'hide' how I felt from friends and family.
When I just heard it too many times, "You don't look sick at all! Have they even found out what's wrong???" To me---that was the unsaid, the doubt, 'are you faking it!?'
Barbi and all, just think about trying something like this as this is what I started doing when I had just had enough of it!!!
My responce to Dr's and everyone was----" Well thank you, I work really hard at hiding it!!! It is hard sometimes though!!! Then walk away!!!!!!!!!!!!!!!!! They won't say it again!!
Please remember that I AM NOT MAKING LITE OF THIS AT ALL!! I went through it for years and I know how frustrating it is!!! But for me, I would love to 'not look sick' most of the time!!! How ironic huh, the very thing that used to make me sooooo angry! Funny how things change.
I never, ever thought I would say that! But, now I can't hide it at all. My eyelids droop so bad that it's hard to see sometimes. Left side droops 95% fo the time, bags under my eyes so big you could hold a pencil under each one---LOL. I always look sick now and no amount of make-up, jewlrey, hair style hides it anymore! Kind of sucks---I'm certainly not attractive to my husband anymore and it's all to obvious, and it hurts a little.
But---I've been there and y'all need to come make with something and let them all know that it's not too cool for them to say that to you!!!!
TCW----LOL--ha,ha,ha, Love it, I cracked up when I read that--best reply I've ever heard!!!!!
BettyG----Great one!!! That's exactly what if feels like and pretty much what's going on, huh!!!
Many blessings y'all!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
I tell people that I've become really good at hiding it. I work full time and have throughout this whole treatment (except in jan i am going on disability. My work has no clue.
I feel crappy most of the time, but make-up can do amazing things and so can a nice outfit.
If anything I think this enlightens us (that are chronically ill) on how superficial our world is. How encrediable unaware most of the world is on a real level.
It's like the 1950's, everyone with the perfect family, husband and wife and two children boy and girl and a dog. Only we've modernized ourself to think that because gay people can have families, and fashion has become affordable, that anyone who "looks" trendy or has a decent car, must live this great life-style or at least a normal one.
It's sad to think that 50 years later our world still masks disease to the point that it goes undetected by the average person and yet once found out incrediable screwintized because the un-sick feel fooled.
A couple of hundred years ago, Benjamin Franklin shared with the world the secret of his success. Never leave that till tomorrow, he said, which you can do today. This is the man who discovered electricity. You think more people would listen to what he had to say.
I don't know why we put things off, but if I had to guess, I'd have to say it has a lot to do with fear. Fear of failure, fear of rejection, sometimes the fear is just of making a decision, because what if you're wrong? What if you're making a mistake you can't undo?
These people have no idea what kind of situation we face every day. Because they are too scared to even see beyond our appearence. We are the braves ones facing our biggest fears every day.
Happy holidays, L
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
After a long enough time you may not have to worry. They don't say that to me anymore -- I kind of wish they still did.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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i recently posted a topic on what my cousin told me, basically to forget this whole lyme thing and to just get on with my life...
i was and still am speechless.
ofcourse other than myself (and the good folks here) noone will underdstand you or feel your pain and misery.
please stay strong and treat yourself since noone else can do that for you,
this may sound easier than done but i am trying to somehow take my very own advice as hard as it really is.
on the outside i too look good and healthy,
but on the inside i know and feel something is not right and by blood work as well as my doctor agrees with such.
so i try to watch alot of tv and do sleep alot now thanks to xanax.
also remembering how my life used to be not very long ago makes me very upset, since i was a totally different outgoing person who loved to travel, drove nice cars, loved to party, went out everyday and did all types of cool and different things, and was always with the in crowd...
now things have changed, my life is ruined as i see it now, and coming to an understanding with such is the hardest for me.
and when people tell you things like what my cousin and others told me is hard ad depressing.
so regardless of what people say and think, stay strong and treat yourself and know that one day you will be back again.
those who dont help and dont understand are not your real friends.
good luck.
best regards, eric
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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Bless your heart; we all know how it feels to 'look back at what life once was'----I'm sorry!
Remember, what once was...can be what is to come! I hope you check this post again because I want you to save it to your favorites. Then please go back and read what you wrote and the advice you gave her in your post!
I'm pretty sure this is advice that you were trying to except also and you can! Read, and re-read it again and again! On a bad day or moment, come here and post away!!!!
Also----WHAT IS YOUR COUSINS E-MAIL ADDRESS!!!???????
Look at the post by Tincup, "The Spoon Theroy" and make him go to that site!!!!!!!!!!!! Then hand him a bouquet of spoons from all of us!!!
Hang in there!
Posts: 351 | From Georgia | Registered: Feb 2008
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I'm not sure how old you are, but I am 24. I used to go out and party, was alway the one who organized everything, drove the nice car, had the great boy friend, lived every moment. I was actively involved in philanthrophies, work, sports, and a social life that never ended.
3.5 years later some of that is gone, some of that is on hold, and some of those people are still around. People see and do what they want to. We can change no one but ourselves.
My doctor told me it was going to be a long road. I thought she meant 6 months. haha There's so much that we gain from this disease. There's so much that changes us to appreciate what others can't even conceptulize.
We may have a disease that isn't curable, but we have the biggest hearts, the most patience, and the stongest hope out of any single group I've ever met. We will find a cure, we will get functioning again and we will move forward.
I don't want to go back to my old life. I want to move forward with my new one.
Smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I know everyone already knows this, but this is why most have gone for so long w/o being dx, or told the all famous, "It's all in your head!!"![[Frown]](frown.gif)
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