posted
responding to Green's post about looking so much younger for our age got me thinking about the problems i had getting diagnosed...
For me, one of the most frustrating things (emotionally) with lyme is that I "look so good!" i don't look gaunt and weak when I'm out in the world.
so many doctors sent me home because they couldn't see or touch the symptoms i complained of.
i don't blame them, but it probably would have helped if I'd gone in limping and with huge dark bags under my eyes... (like before the makeup and painkillers!)
I've had to put a lot of life on hold due to my health, and i've heard "you don't look sick to me!"
That's because when i look and feel like death i hibernate in my bed!!!! duhhhh! anyone else feel this frustration?
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I get the same Toby. It stinks. I have even said maybe if I shaved my head I'd be taken more seriously.
Just goes along with the territory.
Feel better, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
For yeeeeeears I got, "you're young, you're healthy, there's nothing wrong with you, don't stress so much, just try to get more sleep, you look great,' and my favorite..."I wish my wife looked as great as you."
I only got a diagnosis after I went to a friend who is a naturopath and begged him to test me for everything he could think of. His first test was for lyme, and the rest, as they say, is history.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
That is a good question. Probably. When I got sick it was June, so I was somewhat tan, and in very good shape.
I bet people in general take my illness less seriously too, as I am always told I look fine. Which I don't understand because I always have dark circles under my eyes!
Posts: 449 | From Vermont | Registered: Nov 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have always felt I needed a head band type of thing or a indicator like my power chair has on it to show how much of me is working at the moment.
Kind of like the bars on a cell phone as far as reception.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
As far as delaying my dx, I think better testing and education would have helped.
I recall seeing my reflection in a window after a doctor's office visit and it hit me...I look normal.
That is what the doctor sees.
They can not see weakness (with the exception of needing to lie on the floor to talk with them), or pain, or the brain fog, or so many other symptoms that go along with this.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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toby67
Unregistered
posted
kam, my husband and kids would love one of those - they could check my levels before they asked me for anything! "Oh, Mom's in lyme zone, never mind!"
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
"O, yes, you look so good!!!!"
It was very hard to be taken seriously!! That is crazy-making behavior no matter what the relationship!
Without a perfect bulls eye appearing out of nowhere......I would still be in the same boat.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
About a week ago, I felt the worst I had felt in a while.
I wasn't sure if my body wanted me to throw up or what. I simply felt awful.
I went into the bathroom stall and when I looked in the mirror I said to myself "I really do look like there is nothing wrong with me"
I still can't believe how awful you can feel and it not be represented AT ALL by your physical appearance.
... Kind of not related to this particular topic, but I HAD to put it somewhere:
So I asked the head of my major (molecular and MICROBIOLOGY) why we don't learn about spirochetes (if you can believe it, we don't)
she stated 'because we don't have time'
I stated "one of the reasons i ask is because i have lyme disease, etc etc"
she looked at me with a big, teeth smile and said "oh no" in a very ... what's the word.. 'ignorant' tone of voice.
this is the HEAD of the Microbiology Major!! And she teaches the micro class too!! How scary!!!
but yea, i always appeared fine too. ...annoying.
Hope everyone is having a good day
~Green
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes . . . ( . . . "you have such nice color to your cheeks" . . . "You're overweight, but you'd be really beautiful and feel better if you just exercise more.")
So did having a certain degree of intelligence . . . (. . . "Gee, you're a smart woman; whatever are you doing coming back here?")
So did some of my jobs . . . ( . . . "stress is your only problem - you have to relax" or " . . . you're just afraid your new boss is going to ask you to actually work for that paycheck.")
And, when I could no longer talk or walk - and had daily seizures - I was still told "nothing is wrong with you."
So, even when I no longer looked okay, there seemed to have been some magical eye glasses that only doctors wore. They must have also worn earplugs.
--
I recall reading that in the days when not much was known about TB, many people could not get medical help because their cheeks were so rosy (due to fever, duh!). Many were told they had "good color" and to get back to work.
I remember reading this is a Sunday New York Times Magazine article sometime between 2000 - 2005.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
LOL-
It took me 5 hours (no lie) with breaks every 15 minutes or so to make myself "presentable" for my ID appointment.
I was completely without words when he told me I couldn't possibly have Lyme as long as I thought because I'd "LOOK" much sicker.
(That was the last time I did that! Now I go with NO makeup and don't spend more than an hour and a half. That makes it easier to compare me to a "normal" person)
His response to questions I asked...."Well THAT'S what they're teaching at all the MAJOR Universities.
Don't get me started.....I could go on and on.....
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
My family cut-off their support for my illness (Lyme/Bart.) b/c they say: "You don't LOOK very sick?".
My lawyer said the same when I tried applying for disability.--and that I'd have to wait at least 2 and 1/2 YEARS.
When I burst into tears in front of my PCP...he immediately prescribed me 1mg Xanax, and 10/325 Vicodin.
Other Dr's have yelled at me for lying about Lyme disease in order to get drugs!-Must have looked OK that day.
Truly, "The squeaky wheel gets the oil".
"The crying baby gets the milk". etc...
Too bad medicine isn't fully based on facts.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
AND the cognitive deficits!!! After taking hours to organize everything before going to the doc.....and then being told "There is no way you can have cognitive deficits, what kind of game are you playing?"
So much for "looking good" and "intelligent"!!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
Me too. I spend so much time behind the scenes, organizing and fixing up in order to come across as "together." Then it ends up working against me, because everyone feels the need to tell me that I am fine!
I even receive these comments from those very near and dear to me. This hurts me the most, even though I am sure their intentions are good.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
I was told I look great. I need to wear a hat inside and out doors because of extreme light sensitivity and migraines and people including my husband (soon to be ex) used to think it was my security blanket because I wouldn't be without it. I looked fine. I couldn't understand how they couldn't see the pain in my face and eyes.
Oh man, don't even get me started on the cognitive skills. I have the same issues. I'm going through a divorce and my husband is accusing me of faking an illness after 9 years of being sick. It's like I'm damned if I do and damned if I don't. I try to look and sound all together and I'm told I'm faking. I just leave it be and I'm told I must be faking and drinking when I haven't had a drink in 15 years.
It never ceases to amaze me. Who would fake this? I mean come on it's just common sense isn't it?
Fancy
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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